223 Days To Mt. Kilimanjaro – Your Help Is Needed to Pass National MS & Parkinson’s Disease Registries Act

You can help urge Congress to support the building of  a national data base of information on neurological diseases that ultimately assist researchers who are trying to find the cure for Muscular Sclerosis and Parkinson’s Disease and other brain disorders. All you have to do is make 3 phone calls:

1.  Call your two state senators – ask them to help persuade Senator Coburn, (R)Oklahoma, not to stop this bill from passing on the Senate floor. This  link will take you to a page to give you the phone numbers for your Senators.

2.  Call Senator Coburn’s office to voice your opinion.  Tell him in the interest of making more data available for the study of neurological diseases he needs allow this bill to pass. Call his Washington office at (202) 224-5754 and say: “The Senate must take action on S. 1273 this year! Senator Coburn, your support is needed to make better data available for our community!”

Below is the letter from the Parkinson’s Action Network and the Summary of H.R. 1362/S.1273.

Last Chance to Pass Bill for Better PD Data!
Call your Senators Today!
We are down to the wire, and this is our last chance to pass our bill to create a national data system for neurological diseases, including Parkinson’s.  Our bill is now stuck in the Senate, and unless Senator Coburn from Oklahoma agrees to lift his objections, we will likely not see our bill passed before Congress adjourns.

For the past two years, you have been urging Congress to pass H.R. 1362/S. 1273, a bill to create a national surveillance system for Parkinson’s, MS, and all other neurological diseases.  In September, we succeeded in getting the House of Representatives to pass H.R. 1362, the National Neurological Diseases Surveillance System Act.  Despite modifying the bill in the House of Representatives to include all neurological diseases, Senator Coburn still objects that the bill is disease specific and will not let our bill move forward in the Senate.  Now we must rally once again to have the Senate act on this important effort before the end of the 111th Congress!

Here is what you can do:  Make three phone calls.

Call your two Senators and ask them to urge Senator Coburn to let the Senate pass S. 1273. Click “Take Action” for talking points and phone numbers for your Senators.
Call Senator Coburn and ask him to allow our bill to move forward.  Call his Washington office at (202) 224-5754 and say:
As a member of the Parkinson’s community, I ask the Senator to support moving S. 1273 in the Senate.
The House-passed bill (H.R. 1362) expanded the legislation to collect critical data on the incidence and prevalence of all neurological diseases, including Parkinson’s.
As a doctor, I’m sure Senator Coburn understands how critical better data is to advancing our understanding of neurological diseases.
I ask that the Senator support moving the bill before the end of the 111th Congress. Please help us make better data a reality.
The Senate must take action on S. 1273 this year!  Please urge your Senators to support Senate passage of S. 1273

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Following is a summary of HR1362 that is in front of the Senate now.  The Bill has been signed by the House of Representatives and now needs Senate vote to pass.

3/5/2009–Introduced.
National MS and Parkinson’s Disease Registries Act – Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS), acting through the Director of the Agency for Toxic Substances and Disease Registry, to: (1) develop a system to collect data on multiple sclerosis (MS) and a system to collect data on Parkinson’s disease; (2) establish a national surveillance system for the collection and storage of data for each such disease, including population-based registries of U.S. cases of MS and Parkinson’s disease; (3) provide analysis regarding expansion of national disease surveillance systems for other neurological diseases and disorders; and (4) establish the Advisory Committee on Neurological Disease Registries. Allows the Secretary, acting through the Director, to provide for the collection, analysis, and reporting of data on MS and Parkinson’s disease. Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to Parkinson’s disease and MS data. Requires the Secretary to ensure that epidemiological and other types of information collected are made available to agencies such as the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Department of Veterans Affairs (VA), and the Department of Defense (DOD).

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